OMG, this fever....

[cariad]

No, no, no, a billion times no!!!!!!

I feel a cold coming on, my throat is really dry. I just took my temperature and I HAVE ANOTHER FEVER. About 99.5.

I never got the doxy script filled and am paranoid that I just let pneumonia bacteria back into my system. I see my doctor before work on Friday - I want to take Bactrim, or really anything but that drug that will ruin my ability to work. I don't know what I'm going to say to the GP, if I'll be honest or not. I hate that little kid feeling of being scolded by medicos. I'm not someone who is prone to nervousness about disease, but I am getting wound up here.  

[MooseMom]

Oh cariad, I'm really sorry to hear you might be sickening for something.  I don't blame you for feeling wound up.  Do you think you should try to get an earlier appointment?

Get well soon!  I hope this will just magically go away. 

[jeannea]

Rest, fluids, Tylenol, positive thinking. What's to stop you from filling the prescription today?

[cariad]

It seems to be just a cold. I've been diligently drinking my apple cider vinegar and water. () It cheers me to think of the rhinovirus sizzling in an acid bath. (Hmmmm. Perhaps this is once again affecting my brain....)

I see the GP in two days so there seems no point anymore in getting the prescription filled. Oh, Jeannea, it was 9:41 PM here when I posted last. The pharmacies I know of in our area shut at 8PM or earlier although in an emergency I'm sure there's a 24-hour one in one of the major cities near to us. By near I mean 15-20 miles away. So that was why I didn't jump and go fill it - not motivated!

I think it's at its worst today, which is not terrible. Teachers' unions took industrial action (again) so my younger son and I got to have a lie-in as his school was shut for the day. Aidan's school operated as normal. Hopefully the extra bit of rest will do the trick and I won't be sniffling tomorrow at work. 

[Iona]

Cariad, you do make me titter!

Hope you feel much better tomorrow...glad the strike allowed you some precious sleep 

[cariad]

Iona, I've been thinking about you and hoping you're completely recovered from your own latest health challenge. Please tell us how you are doing if you get the chance.

Well, things are slooooowly moving forward. I've been contacted by Guy's Hospital and need to make an appointment with their infectious disease group. I also have a dermatology appointment (that needs to be rescheduled, but at least I am one step closer to having a few worries addressed).

I am frustrated about this antibiotic nonsense. I must have misunderstood something the doctor said because I realised that it's been two months and I still don't have a prescription for Bactrim despite the GP saying I could have it. I thought maybe he had thought he had given me the prescription but didn't? I was nervous even getting the prescription from him as he seemed to think it was the same as clotrimizole, and unless I am irreparably turned around on this, that is wrong.

So I rang the medical centre only to be rung back the next day by the GP saying he was going on holiday for 10 days and that any other doctor there could help me. So I rang again, a doctor rang me first thing in the AM over my week's holiday and I missed the phone. Phoned back, they said he *might* call back, jumped in the shower, which is of course when the doctor chose to try again. At this point I told Gwyn I was going to invoke my sanity-preserving rule: if doctors make any treatment whatsoever too difficult to obtain, I give myself permission to blank it. Yes, I know this won't be a popular statement here, but there it is. So I rang back a third time and told them that I am almost never available to answer the phone during the day, could we please remove the talking-by-phone step? They said I could come in for a med check that afternoon with a nurse practitioner and she could prescribe whatever I needed. "I'm not on any meds, there's nothing to check" seemed a reasonable statement, to which the receptionist said that my prescription stated that I needed a med check in mid-May. "You mean the prescription that I never received?"

So, I went down there and, no word of a lie, the nurse practitioner had no idea what Bactrim was, was clutching one of those med books like a security blanket and kept repeating the word 'Bactrim' in a questioning tone, but she seemed to be mispronouncing it, splitting the syllables incorrectly no matter how many times I repeated it for her. "Bact-rim? Bact-rim?" over and over and over. I said "It's a sulfa drug" and "It's an old, common medication" numerous times, but nothing helped. She finally explained that the GP was not going to prescribe it, that he wanted Guy's to prescribe it instead. OK, fair enough (not really, my previous GP fearlessly prescribed it without all of this palaver). 

I have to make an appointment down in London within the next two weeks despite having scarcely a spare moment between now and mid-July. I really don't want to take a day off as I hate forfeiting the salary, but I think that will be unavoidable. Oh, well, I should be grateful that I am getting exactly the care that I asked for, and I am, truly.

[jeannea]

What a bunch of screw-ups. I hope the people in London are better able to help.

[cariad]

Thanks, Jeannea! I go down to Guy's next Wednesday. The appointment says I'm to go to the chest clinic, though. Chest clinic? Is that even a thing? Don't have the energy to deal with it right now so am just going to go down there and hope it will sort itself out. Somehow it always does. I'm bringing the tubes from Northwestern with me and going to implore them to help me with that, too. Apparently, Louisville needs to be forewarned that the blood is arriving. I don't think there is a hope in hell that this will work out for them, but perhaps I'll be pleasantly surprised. I remember now that during the trial they had to have staff available to begin work immediately on the incoming blood samples, and it would take roughly 14 hours so they would all have to work through the night until it was finished. Very time sensitive. FedEx International is not nearly as precise as the American version so this may end in disappointment.

[cariad]

I am going down to London tomorrow. No idea if this is even the correct clinic or will do me any good whatsoever. I suppose I just want to firstly get the damn Bactrim already and secondly discuss what it is that I may have done to myself by participating in the trial. I need to speak to someone who doesn't just pretend to know what I'm talking about, and I don't believe there are many doctors in this country - any country - who can do that right now.

Had a unique situation at work a few weeks back. It is GCSE season (or was) and we had one regular who would always come in, order a pot of Assam and tell us about her tests. I work with an unusual crew for a tea room. One co-worker is an engineer by training. He's one of these that seems to know a bit about everything, and can be rather pedantic when he thinks he knows more about a subject than the other person in the conversation. Most who know him suspect there's something off about him - his social skills are weak, but he does seem to realise that it's something he has to work on, and I like him as a person, I've just accepted that he will often wander off in the middle of a conversation, and make tense little noises whilst I'm speaking indicating that he has something to say next.

So, a few weeks ago this woman was prepping for her exams and saying she wanted to eventually work in stem cells regenerating organs, or making it possible for those with spinal injuries to walk again, or similar. She went on for a bit about the miracle of wiping out waiting lists and giving someone a perfectly matched kidney. I thought for a moment if it was appropriate to mention myself, and finally decided that if she's really interested in this work it would be wrong to just stand there silently. So, I gave her the 50p tour of the state of stem cell transplantation today. My co-worker walked in toward the end, had an absolutely stunned look on his face, inhaled as he does when he's about to grace us with his superior knowledge and then very pointedly checked himself and changed his tone to enquiring rather than lecturing. He literary said "people on dialysis have to.... I mean, I'd heard that people on dialysis have to watch how much they drink?" I said absolutely, except when they don't. I drew the line at saying the word 'urination' in an eating establishment, so I just sort of talked around it by saying it depended on the type of dialysis and how much function the person retained. Don't know if the girl got anything out of the discussion in the end.

[Ninanna]

Good luck with your trip to London Cariad. I hope you are able to get what you need.


That is too funny about your coworker though. I feel lucky that I work at a stem cell company, so people actually kinda understand. The company also developed a treatment for GVHD, so when I tell them I had it, it has the effect of giving me a little 'street cred' so they don't get irritated that I'm only there part time lol.

[cassandra]

You're funny, anyway good luck tomorrow, I do hope you get the Bactrim too

Love, Cas

[willowtreewren]

I have two friends very much like this fellow of whom you speak! One realizes his deficit in social skills and has worked diligently over the past 15 years to improve. The other is not quite so socially awkward, except for being pedantic. I can well imagine what that conversation must have been like.

Good luck on your trip. May you get some answers and some Bactrim.

 

 

Aleta

[jeannea]

I hope the trip to London helps. Keep us updated.

That's a really sweet story. It sounds like he was trying hard to show he knew you knew more.

[cariad]

Well, that could have gone better.

I am pretty sure I've now been officially flung into the NHS black hole of despair, or something. Yesterday I was trying to find a train ticket down there and flatly refused to pay the nearly 70 quid for a return ticket to London Bridge. I investigated as many options as possible and decided I'd try a trick we've used before - drive south until I'm just inside the London underground system, then park up and tube the rest of the way.

Everything was going swimmingly - I had found advice on the internet that Hillingdon is the best option for this manouevre, so I am bombing down the M40 smiling at how clever I am when I hit a solid wall of traffic a mere 3 miles from the park and ride. Before I knew it, I was so delayed that I never would have made it to my 10:15 appointment. As I was stuck in traffic I asked Gwyn to ring Guy's to ask if there was any point in me continuing on. I decided that until I heard otherwise, I would go down there anyhow and hope that they had also been delayed and would still see me. Then my horrible SatNav sent me in the wrong direction.... twice.... and I got to the station only to see "Sorry, car park full" scribbled on a sign. I puled over and tried at least a dozen times to ring the department and ask what to do, or at the very least warn them that I wasn't going to make it. If I did reach someone they would just transfer me back to the phone menu. Gwyn had the same experience when he tried, and I finally gave up and turned back home. Gwyn emailed the doctor I was going to see who wrote back one word "thanks". Sarcasm? Perhaps, no way to tell.

So I am walking away from this situation. The letter they sent me basically said that if I didn't turn up they'd never speak to me again and I'd have to go back to my GP. I feel bad about letting Joe (surgeon) down, but it is only sodding Bactrim and they just won't hand it over. As much as I'd like to meet this doctor at Guy's and see if she can offer any assistance, I cannot afford to gamble a day's salary, the price of a train ticket, and the petrol just to try my luck again when I suspect she won't be able to enlighten me any further about the long term consequences of this transplant.

Sigh. I got such a nice woman on the phone when I rang Guy's a few weeks ago - the charming, competent ones are there, I just cannot reach them and my frustration has got the better of me.

[cariad]

Thanks for all the support, ladies! Shame I have no new information to offer.

Jeannea, I agree there was something sweet about my coworker's response. He does try, and ever since I've realised that he isn't trying to be rude we have a good time working together. The chef is a Polish woman and one day he was clearly trying to impress both of us with his knowledge of Polish cuisine - he got the same self-satisfied look on his face that my younger son gets when he knows he's done something well, where he glances over at people in the room to make sure they've noticed what he's done. It is charming in its way, even on a 36-year-old.

[cassandra]

       


How are you feeling now?
Don't worry about the 'blacklisting' nonsense remarks from the NHS.  If you still want/have to make an app in Guys you could try to arrange that by phone, and be proactive by "advising" the only time you will be available for receipt of a phonecall (so Doc doesn't waste precious time (did work a few times, no garanties of course) ,and you won't miss the call...... Doc can arrange the app in Guys, and the Bactrim if you still want/need that.

Good luck with everything, and lots of love, Cas

[cariad]

Thanks, Cas! Weirdly, I have already received another appointment date, and it's for later in the morning which should make it easier to get there on time. Perhaps the doctor herself sent my info for rescheduling because I don't think Gwyn or I ever officially canceled the appointment.

I also have to schedule a blood draw for the trial. I can only get it drawn on specific dates, and I have to tell them which day I will have it done. They don't like pre-booking these appointments here, it's a weird system that many people complain about, and it doesn't work well with the way America does these things. It was nice to talk to Northwestern, though. The current research coordinator and I talked at some length about the trial and the differences in our healthcare systems and I feel I have been updated somewhat on the state of the research.

[cassandra]

Sounds promissing, and I'm very glad you feel more informed about the trial.

Good luck, and love, Cas

[Ninanna]

Glad you have another appointment!

Is there anything you can share about your trial?  Like you I just love to hear about the trial differences and find the whole thing vastly interesting!

[cariad]

Is there anything you can share about your trial?  Like you I just love to hear about the trial differences and find the whole thing vastly interesting!

I wish I had answered this earlier as I remember very little about that conversation now that it's been a couple weeks. The big news is that they are now being funded by Novartis - yes, the Myfortic people. Talk about hedging one's bets! (Spell check recognises Novartis but not nephrologist? Odd.)

The PBSC conditioning that this trial uses is proprietary, and they have been criticized for not freely sharing that information, especially since it seems to work very well indeed. My doctor has no personal financial stake in this so I doubt it was his decision to keep any description of that key component out of the scientific literature. It was disclosed to me who did stand to gain financially because participants should always be made aware of that information.

We talked about the trial entering phase III, but I believe that happened some time ago. They are now collaborating with other hospitals across the country to bring this procedure to more and more patients. Perhaps Novartis is interested in acquiring a patent on the procedure? Dunno. I know the first trial I looked at entering was for Belatacept and being done at UCSF, and I've been following the results of that off and on. Belatacept is an infusion that supposedly has no side-effects (that seems unlikely to be completely true, but I've never been on it) and has shown promise for allowing patients to come off all other drugs, but you do still get these infusions every 6 weeks or so. Last I read, Belatacept had been acquired by Bristol-Myers Squibb, was in Phase IV, but it had been placed in their 'orphan drug' division, which cannot be good news. I would love to ask Joe (surgeon) what he thinks of Belatacept, I don't think he's aware of how close I was to enrolling in that trial. The doctor was willing to rewrite the protocol for me to participate, the problem was that they were trying to do it as a double blind study so receiving Belatacept was not going to be a sure thing and I wasn't willing to risk being assigned to the control group.

I love having access to such fascinating information and learning what they really think of each other. It is so competitive. Next time I see Joe, assuming there is a next time, I will have to ask him what he thinks of the Hopkins trial. I imagine it will be brutally honest and if he sees any flaws in it, he will point those out. I would bet money that you would find the same reaction if you were to ask your doctors about Northwestern's study.

[Ninanna]

You are right about them criticizing them for not disclosing the proprietary information. Before I started this my surgoen and I had talked about the northwestern study and he did mention that...that no one knows exactly what they are doing to the harvested stem cells, and that it was always subject to corporate whims since they were the ones paying for it. A few months ago he had mentioned that the company had been bought out, so they weren't sure what was going to happen next.

I also heard a couple things about a patient or two in the northwestern study I probably shouldn't know. If you finally clean out your inbox I can PM you lol =P

The Hopkins study is all being funded by the immune tolerance network. I am still the only participant at this point. Their inclusion criteria is extremely strict and rejecting people left and right. One doctor said they had set out to answer a few specific questions, and too much variability would make it harder to answer. I was told a lot of people were waiting on the results of this study. I am almost to the drug withdrawal part. I have to pass by biopsy test on the 30th of July and then they can start it.

[Ninanna]

Oh, I had also read an article about NY Presbyterian starting their own program like the one at Hopkins. When I asked them about it they had said a colleague had actually left to go there. I told them quite frankly that I thought that was a scary prospect. NY Presbyterian does not have a bone marrow tx program at all. At Hopkins I felt relatively secure because they have been doing bone marrow tx for a long while, have a great set up for it, and their nurses are all very familiar with the process and problems that can arise.

The double arm transplant recipient at Hopkins also apparently received stem cells from the cadaveric donor and is only on sirolimus. I asked about that as well and my BMT doc said it was nothing like this trial at all, and they just give the stem cells and hope it works through some black box mechanism. Sorta reminded me of the Stanford trial where no one kept donor cells for more than a couple weeks.

Do you ever just stop and be amazed that your blood DNA is a perfect copy of your husbands?  You even have XY DNA now!

[cariad]

You are right about them criticizing them for not disclosing the proprietary information. Before I started this my surgoen and I had talked about the northwestern study and he did mention that...that no one knows exactly what they are doing to the harvested stem cells, and that it was always subject to corporate whims since they were the ones paying for it. A few months ago he had mentioned that the company had been bought out, so they weren't sure what was going to happen next.

Thanks for the comments, it's wild getting to talk to you about this since we are obviously hearing from opposing sides in many respects. This is exactly the kind of criticism I expected. They bicker like children sometimes, it's funny and predictable. I think your surgeon suggesting that they are subject to 'corporate whims' is hyperbolic and a smidge misleading, though. The PI owned her own company that took on much of the financial risk of this and therefore deserved in my opinion to reap any financial reward that could develop from it. It's a capitalist country, she didn't create these rules.  (I have no personal stake in this beyond being really grateful to Joe and all the effort he's put into helping me, so that should not be read as angry nor defensive.) As far as I've ever heard, most of the funding came from ITN and the Department of Defense. I had not heard that the PI had sold her company but I guess that would explain why her name doesn't seem to be listed on the trial details any longer. I see the cell conditioning as no different from creating a new drug and insisting on exercising your rights to patent the formula. I do suspect that if Hopkins gets anywhere with this trial that they will eventually have to get corporate funding, there is so little available in the way of public funding.
 

I also heard a couple things about a patient or two in the northwestern study I probably shouldn't know. If you finally clean out your inbox I can PM you lol =P

One step ahead of you! Cleaned out my inbox a week or two ago, so I'm eagerly awaiting the gossip on Northwestern, though a small part of me is petrified that some of the dirt will be about me. That could be awkward....

The Hopkins study is all being funded by the immune tolerance network. I am still the only participant at this point. Their inclusion criteria is extremely strict and rejecting people left and right. One doctor said they had set out to answer a few specific questions, and too much variability would make it harder to answer. I was told a lot of people were waiting on the results of this study. I am almost to the drug withdrawal part. I have to pass by biopsy test on the 30th of July and then they can start it.

Yes, this is part of the job though, they must find that balance. Put another way, broader inclusion may make it harder to answer their questions, but how many questions will they be able to answer if they are never able to recruit another participant? They need to address this, decide on a solution and move forward with the study already.

Wow, 30 July. Not long now. Fingers crossed for you. I didn't have to have a biopsy before coming off myfortic, but I did for prograf. I do not react well to biopsies and will never have one again. Best of luck to you. You know I'll be waiting to read your updates!

[cariad]

Do you ever just stop and be amazed that your blood DNA is a perfect copy of your husbands?  You even have XY DNA now!

I honestly don't give the transplant much thought these days, but I guess that is a little crazy that I cannot be identified by my own blood anymore. I believe I already had some XY DNA because I've had two boys and I read somewhere that if you've ever had a boy you will have traces of their DNA left in your system. Perhaps having them helped pave the way for my body to be more accepting of the stem cells and kidney. Pregnancy is one of those biological mysteries, at least that's what we were taught at school, because you have this foreign material (for lack of a better word) in your body and yet your system does not attack it. It can create antibodies of course, but for whatever reason your system does not press those antibodiea into service.

I suppose that my immune system has now been taken over by my husband's DNA, lucky me, he's one of  those people that fights off all illness with ease. Although come to think of it, it has yet to serve me as well as it's served him, witness the bacertial meningitis that started this whole topic.... 

I do so hope that this doctor has answers for me next week (assuming I make it to the appointment). One of the huge drawbacks of these trials is that doctors outside the trial no longer have any idea how to approach you. This woman was recommended by Northwestern, so hopefully....

[cariad]

Ah, I don't think I ever mentioned that shortly after writing this last message I received a letter through the post informing me that they had changed my appointment to mid-August. Except we are planning a trip out of the country for that week, and they even set it for 10AM which would force me to travel during peak hours. Because I can never reach them by phone I'll have to email and explain that I won't be keeping that appointment and will need yet another new date.

SO I am right around six months past when I was supposed to be starting a lifelong course of antibiotic, and still no bactrim. Must resist urge to invoke sod-it-all rule....